Coming out

I went to the Opening Ceremonies for AIDS Lifecycle 4 last week, hoping to find inspiration there. (I’ve been stuck on the book for quite some time now.) I found them hauntingly poignant. During the ceremony, the Positive Pedalers, a group of riders living with HIV, march solemnly down the hall, escorting a riderless bicycle that symbolizes everyone lost to AIDS. They carry white spirit flags, which will be inscribed with dedications from all the riders during the journey. But they themselves are the human face of AIDS: on this one week, they have deliberately chosen to make themselves visible, to let people know they are out here, and to cut away the stigma of AIDS.

Watching the blank white dedication flags go by, I realized why I hadn’t been writing the book: it is impossible to write about someone else’s courage and openness when you yourself are hiding.

So I have been thinking about it most of the week since, and have decided it’s time for me to come out. I’m bipolar.

I have been bipolar since my early teens, although I didn’t have a name for it until a year ago. All I knew was that I kept having short, painful depressions–emotional migraines, accompanied by horrible visual images of being tortured–knife thrust between the bones of my forearms, arms chopped off, skinned alive. Some days I couldn’t deal with people at all. Some days I couldn’t eat. I learned not to even think about some things because it might trigger episodes; I did stress management classes, and developed ways of identifying when a cycle was likely to start. I shaped my life around staying stable, adjusting my activities around these cycles–and still every ten years or so things would get out of hand, throwing me into a descending spiral of agonizing emotional pain.

Twice in my life I’ve decided, after months of torture, that life was simply not worth living. I have twice been saved by minor miracles, and the kindness of compassionate strangers. I don’t expect this to keep happening, and I’m not sure I would want it to. I feel such pain in the bottom of severe down-cycles that death would honestly be a mercy. And I will be living with it for the rest of my life. Bipolar disorder is incurable, and mine has been (thus far) untreatable.

I was thinking about all this while I watched the Poz Peds passing…they too have faced huge challenges with HIV, and yet they are still here. One of the Positive Pedalers committed suicide last year–the pain in his feet was so bad, and so untreatable, that he decided it was time to go. And yet he conquered. He spoke out about AIDS, he raised money, he made himself the public face of the disease so that others might live better–and he had lived. His life meant something.

I have said very little about being bipolar, even after being diagnosed a year and a half ago, because bipolar disorder is not something you talk about. My family still does not know how to discuss it; they want to be supportive, but it is awkward. How do you talk to a loved one about their being crazy?

The truth is that mental illness is not about being crazy, at least not for me. Stereotypes: irrational, delusional, potentially violent, excuse-makers, child-like–incapable of making good decisions. I’m none of that. I have periods of extreme emotional pain, but I’m always intellectually aware of what is happening, and am no more irrational than, say, someone who is angry (or in love, politically delusional, etc.). But it is very difficult to explain this to people, because they are so uncomfortable with the idea that they avoid the topic entirely. It’s like my experience in working with the Support Network for Battered Women: we’d go to health fairs, people would be laughing and walking among the booths, and as soon as they saw our booth they’d go quiet, look to the other side, and stride right on by without looking at us. People don’t want to think about it; it frightens them.

I have been told by psychiatrists to pay cash and lie. “You don’t want this in your medical record–you don’t know who might have access to it.” “You’ll never be able to buy insurance again, if they catch the slightest whiff of it.”

I have never even thought about bringing it up at work, even though bipolar disorder is a federally protected disability. Can you imagine telling your boss you have a mental illness? I can’t think of any quicker way to end a career.

I have thought very long and very hard about this, because you cannot put the genie back into the bottle. But in the end, you have to live your life, and you can’t do it if you’re hiding. The Poz Peds get out there and bike with their little flags because they believe in being open, in showing the human face of AIDS, in getting out there and telling the world that people can live with HIV. I believe that’s a healthier way to live than continuing to struggle alone.

For me there is also another aspect: I want my life to mean something. I expect to die by suicide, and I expect to die young. It is important to me that I do something valuable in between. This is why I live so intensely, why I seek out new experiences, and why I try to practice compassion–because it is very, very possible that I may not come this way again. I don’t want my life to be short and full of regrets; I want to live before I die. And to me, much of living means being transparent and open about myself, and helping others. I can’t do that while hiding.

I hope my decision to step forward helps someone, someday. I don’t know if I’ll be active in the bipolar community (my volunteer work with AIDS Lifecycle comes first), but I hope that other bipolar people will read this and realize that they are not alone. I hope people who are not bipolar will read this and realize that they do know someone with bipolar disorder, and have known them all along, without realizing it. I hope some good comes of it.

I plan to write more about this later, but for the moment, I’ll leave it there. For the record, I have ultra-rapid-cycling Type II NOS bipolar disorder–and I’ll stand by it.